Homeward Bound

Its official we are getting discharged tomarrow. Oxygen tanks have been delivered to me here at UCSF and after we get ho.e tomarrow the home oxygen system and portable tank will be delivered. We are so ready to go home. It even seems like all the little things here are driving me nuts now lol. During rounds today I learned a few things that hadnt been brought to my attention before. The main issue was they are thinking he has pulmonary hypertension. He has many symptoms of it. They also said he needed an ECHO but the pulmanologist at childrens would do thag along with the CT scan and bronchioscope. He also has another condition that i keep forgetting the name of meaning something jn his lungs afe floppy. And UCSF agreed to reactive airway disease. Theres more but thats the short hand. Liam is going home on half a litter of oxygen. Its just enough to keep him from desatting and takes alittle of the work off his lungs. I know he would do even better on more but this is enough until we get him to childrens on monday for pulmonology to do their thing. This isnt the end of our journey by a long shot. I doubt were even halfway through our journey. I keep telling myself that things could be worse that God doesnt give us more than we can handle. Tonight im asking you to pray that we have a safe journey home tomarrow and a good weekend together as a family before we are back at this again monday. Im not going to have high hopes, im going to be realistic. Im going to pray and try really hard to leave it in Gods hands. Sent from Yahoo! Mail on Android

Passing the ball....again

Today the surgeons officially wipes their hands of Liam. Atleast thats what it feels like. We were officially handed over to the hospitalist today without warning. The surgeons are too scared to touch the diaphragm because if its damaged and stops working then we have more problems. Pulmanologay wanted to do a ct scan and a bronchioscope but because he has to be intubated theres a high risk of liams lung colapsing. The hospitalist is trying to fast track discharge. Pulmanolohist want him weaned of oxygen then discharged as well. Theres nothing left UCSF can or will do for us. Meanwhile Liam is still having respitory distress several times a day and throwing up when the distress isnt immediately treated. Heres some background on Liams lungs: Liam was born left CDH. Which means his left lung is reallh bad off and his left diaphragm is paralized and useless do to the herniation. The left lung looks big and the left diaphragm has been pulled down low. Now the right lung is Liams good lung. The right diaphragm is his only working diaphragm. The right diaphragm is shaped like an upside down cup pushing into the lungs and is also higher than normal. They arent sure if his right lung is being cramped in this small space causing his respitory issues. Liams right lung is also the lung that keeps colapsing. Theres also some scaf tissue on the bottom of his right lung and no one seems to know why. Thats tbe abrieved version. Keep in mind with all his respitiry problems they still want to seng us home. Frustrating. They are going to do another xray and a ultrasound so see if they see anything that can give answers. Then when he is weined from oxygen, which they want within 2 days, they will hook him up to a pulse ox machine that will record Liams satting minute by minute so they can see how he sats while sleeping. The discharge the following day. They havent done anything that valley childrens couldnt and havent done. We brought him up here because we were told that he needed to have surgery and it was in his best interest to come here. Well we got a copy of the bill for Liams hellicopter ride here and it cost just shy of $49,000. Plus yhe $500 to get me up here with him. I dont know exactly how to explain how i feel about this except pissed, frustrated, angry. I was lied too. Thats all there is too it. And now Liam is being fast tracked home just to end up at another hospital. I appriciate that they saved Liam at birth, and I will always be thankful for that. But it ends there. This will be the last hospitalization at UCSF. The next time we come to San Fransisco it will be on vacation and we will only return to UCSF to visit a few of the nurses that have forever touched out hearts. Its bitter sweet. The supposed CDH specialist are here yet were being told by them the same thing childrens says "we just dont know. Hes an anomoly. He doesnt follow any of the typical CDH paths". I know my son is an anomoly but for him to stump even the supposed specialist just pisses me off. I just dont have any confidence or faith left in yhis hospital, its doctors or any other doctor for that matter. We need Gods healing touch, his guidance, strength and patience. Our family has spent 95% of the time since January seperated. Its unfair to all of us, especially Lanie. We need our family together. Please pray for Liam and our family. Thank you and God bless Sent from Yahoo! Mail on Android

Oxygen/CT scan for Liam

Its been a long couple of days and Liam and I are both exhausted. 3 nights ago I believe it was he desatted for 40 min while I sat here holding him. I called 3 times for help but because of shift change everyone was busy giving reports and we didnt get any help for 40 min. He continued to desat until we got him on oxygen. It was scary. Today we did an upper GI study which showed his fundo was in the correct place and seemed to be working. Now again we are back to no answers. The pulmanologist wants a CT scan of his lungs done. For this test Liam has to be sedated and intubated. This causes a problem because everytime Liam gets intubated his lung colapses and theres a possibility that we wont get it reinflated. The benefits out weight the risks here because we need a good look at his lungs to try to figure out whats going on. If the CT doesnt show us anything then we have to do a bronchioscope, which he has to be sedated and intubated for as well. The last few mornings have been rough. Liam has had episodes at 4am and 7am not being able to breathe. We give him breathing treatments then I just sit there rocking him until he feels better which means I dont get to put him down until after 9am. Its nice cuddleing with him, I just feel bad that hes struggling. Today he had a breathing treatment around 4pm then at 6pm he was struggling again. We deep suctioned him and got hardly anything. The RT sucktioned again and got some mucus. She gave a breathing treatment then used the regular suction on him which pulled out old blood clotts. Before the episode at 6pm the surgeons were hopeing to have a game plan on getting Liam home by early next week. They are talking about sending him home on oxygen. She was saying how it would be a burden for us though but I told her not to worry about that to just do whatever Liam needed. Whatever will help Liam stay home and out of the hospital I am all for. His meds have already been called in and I will walk across the street to pick then up tomarrow. Its weird that they are talking about home when hes struggling, but theyre just hopeing that they can come up with answers. Personally I am exhausted. Our little space in the room is truely little and cramped. Theres the sink and 2/3 feet the crib with a chair shoved between the two that turns into a bed. My duffle bag keeps getting in the way because theres no room for it. Thankfully theres a curtain that I pull around the makeshift bed and tuck into the crib for privacy. That makes it nice. Its not horrible conditions at all it just makes me homesick. The worst part is watching Liam struggle. Id rather be here with him where they can help him that be at home trying to rush him to ER. Ofcourse I miss my daughter and my husband. Its hard having our family split up, especially for so long. I keep praying that this will be our last hospital stay for a very long time. We need our family together. Liams birthday is fastly approaching and we are praying we get to have a big party for him at home and not in a hospital. Over all we're hanging in there and trying to stay strong. Thank you for your continued prayer and support. Sent from Yahoo! Mail on Android

testing the diaphragm

Last night liam started giving up problems. He desatted to 86 and stayed down for 5min before going up to 91 then back down. We were getting ready to turn on oxygen when he went to 93/95 and stayed there. At 6:30am he had a 3min episode. So far today he has desatted just a few times for quick burst. His respitory rate has been the highest ive seen at 78. Pulmonology came in and we did a test that measures the pressure on your intake of breathe. Liam had really great numbers. The highest one was 51. To put it in prospective an adults breathes in 60 and above. This test was really important because the needed to know if his diaphragm was strong enough to do surgery. It is. Im not sure if this actually means theyll do the repair but the docs were happy with the numbers. Were still at a stand still but getting important answers, so its more like a slow progression. Today being wensday I doubt that if they decide to do the repair that itll be this week. Although I shouldnt say that because these things are always last minute, no warning.

I have exciting news to report. Atleast I thinks its exciting. Its a great breakthrough.

First of all Liam has been off oral steroids for a little over 48 hrs now. He only desats occasionaly but goes back up on his own. Still its only been 48 hrs and liam has been known to wait a few days to a week before major desatting.

Pulmanology isnt going to do the bronchio scope until he starts desatting alot. Pulmanologist was trying to arrange it for us to be set up at one of the houses or a hotel and discharge liam to keep him close and have us check in everyday. But pedi surg isnt done with us yet. Miniatis plan as of yesterday was to repair the right diaphragm later this week if pulmanology didnt find anything. Pedi surg didnt come by today, i think tuesdays are big surgery days for them, so I wont know more until tomarrow.

Liams swollow study yesterday was amazing, didnt get a chance to blog it. It test showed that he has amazing oral control and perfect swollowing. Hes just alittle butt that likes to spit the good he doesnt like out at you. Also we learned that if he doesnt want the food he fakes coughing and retches. Its funny and frustrating. It means hes going to fight oral feeding immensely.

Because the swollow study went so well we got to start solids again yesterday. We fed him stage 1 sweet potatoes and stage 2 bananas. Banana was a new taste for him and he didnt know what to think about it at first but ended up eating a healthy portion. We also learned that stage 1 foods and liquids he has an aversion for because theyre too liquidy.

Today I talked to our wonderful nutritionist here Carey. She recommended doing baby foods with meats because of the callories being higher. She also recommendedwe get liam off elecare. We talked about his supposed severe food allergy and because theres were never test done we both agreed he probaby didnt have one. I told her about the soy we started using in december before all the respitory issues and she also agreed that he probably is lactose intolerant. So today liam started prosobee soy formula. Hes been doing perfectly fine. You cant even tell we switched formulas.

I was able to order liam lunch for the very first time today. It was exciting. I stuck with what Carey told me and ordered liam some foods with meat in them:
Chicken and brown rice
Beef, carrots and corn
sweet potatoes

We started with the chicken. Liam though I was crazy trying ti feed it to him and he fought me with every bite but we got in a good 8 bites.
Then we switched to the beef. Even though it was stage 2 it was thick and very grainy. Liam liked this least of all. He started his fake coughing and retching. After a few bites I finnaly got the bright idea to mix it with the sweet potatoes to thin it. The newly created mixture was better. He ate alot. I think he liked it even though he tried to spit it at me a few times. Liam ate more than he ever has.

And even though liams feeds have only been increased for a few days and we only started solids yesterday, im seeing weight gain. His little cheeks are getting so puffy and his leg rolls are getting rolls. I swear he grew a stomach over night, like an almost normal baby stomach. Its happening so fast that its almost like hes just swelling.

Liams getting so much better at sitting. Yesterday he sat all by himself for like 2 min no help at all. Today he sat on my lap and rocked himself back and forth. He also played in his bed. For liam today has been such a big day.













Although Im always asking you guys for prayers, tonight I have a request for other families. I just found out tonight that there are othef CDH families currently here. One family is here on the 6th floor with me. I have yet to meet them but would love to. Theh are here for a repair of reherniation is what a nurse said. There are also 3 babies up in ICN right now fighting for their lives, 2 of which were just born yesterday and are on ECMO. For 1 baby the out look looks grim. I remember being up in ICN and all those feelings. Please pray for these families and their sweet babies. Im casting aside my own worries tonight and concentrating my prayer o these families. I hope thag I get a change to reach out to these families. Thank you for your continued support.

Liam Update

Alot has been going on. I had a huge blog with pics ready to post when I accidentally erased the whole thing.

Heres the short version yesterdays events:
When the docs came in I asked for him to be taken off oral steriods. They decided to bring down the pulmanologist and see what he said.

Liam started showing signs of respitory distress. He even sounded crackly. We called the pedi-surg on duty and the past the ball to RT. RT came in and listened. She gave an albuterol treatment. After the albuterol he sounded worse, like velcro on top of the crackly. She informed pedi-surg and now he gets albuterol every 4 hours, just like at home.

The best part of the day was our visit from Jen Walker and lulu. Liam and lulu were roomies in the icn. Lulu was born a week after Liam, we share a birthday. It was so wonderful to finnaly get to see them and be able to hold lulu and see how well shes doing now. We havent seen them since UCSF ICN days. When I saw them walk out of the elevator I was flooded with emotion. My spirits were lifted when I held lulu. Its so amazing how well shes doing and almost impossible to believe that she had to have heart surgery at just days old. A special thank you to them for comming all the way back to UCSF and visiting us. I will have pictures as soon as I can upload my camera.

While administering Liams biotin into his g-port it got plugged. We tried warm water, coke (soda), something carbinate, and 2 hours later it was still clogged. We had called pedi-surg and everything to let them know. Finnaly at 2:30am the nurse was able to get it unclogged. That was 5 and a half hours clogged and alot of meds missed.

Today has been a similar day. Liam has been cranky and sleepy. His lungs have been crackly off and on.

Pulmonology came down to see Liam. The conversation stressed me out massively. The pulmanologist thought from Liams pattern that it was an airway issue. He ordered that yhe steroids be stopped and theyre going to do a bronchioscope tomarrow or tuesday. He is looking for palips, hemangeomas, or cists. He said there are a few options if any of those are present. He talked about a betta blocker, having EMTs either drain or laser off and a trach. When the word trach was said, my heart stopped. That one word is what caused all my stress. I know we were just talking possibilities but if someone came at you saying trach, I dont think youd smile and be ok with it.

After the visit from pulmonology I just had to get out. I took a walk and tried to relax. I had to remind myself that this was all what ifs and ideas. Its all in Gods hands and I need to leave it there and pray. I need to pray for the right thing for Liam and not for what I want to happen. I have no idea whats best for Liam right now. I know I did the right thing getting him here and asking them to stop the oral steriods. I know im doing the right thing by sticking to my guns and following my gut instinct.

Picture Journey #1

We took liam to Valley Childrens on April 10th for respitory distress and vommiting.


He got his first foot IV


On friday April 13th Liam was transfered to UCSF via hellicopter.


Liam was very comfortable with the transport team and they loved him, especially self proclaimed uncle George who snuck in a cuddle.


The UCSF team that weathered the storms to transport liam to UCSF thank you for getting our precious cargo safely to his destination. And thank you for giving big sister all the time she wanted to love on her brother.


After driving 4.5 hours through rain, lightening, hail that looked like snow we made it safely to be at our little mans side. Instead of getting a decent nights sleep our neice decided to have a sleepover at the hospital with little man. I think she did it for me even though she said differently


So close to having to say goodbye. One last cuddle.




See you soon daddy


Hanging out with mommy



Watching tv


And not everything today, friday the 13th was bad. We got to see one of liams primaries from icn. "Dr" Sue as lanie likes to call her. This woman is amazing. Liam snuggled right into her arms and they had a few minutes of cuddle time before she had to rush off promissing to return monday for a longer visit.


As soon as i get to a computer i will upload all my good pictures.

Long road to UCSF

Alot has been going on. Liam has been struggling with respitory since january. All his issues start with respitory distress then it causes vomitting. Liam went into Childrens on tue, was admitted, then trasfered to UCSF via hellicopter. Now we running test and trying to figure out anwers to questions like: Was Liams CDH really bilateral and not just left? If we repair right side by pulling it down what will his lung look like? If his right lung is squshed in the right side of his chest not able to move properly? We have alot to figure out and we have to come up with a way to do so. Please pray that the surgical team gets on the same page as one another and that they can find answers as well as a solution to the problem. A problem we are now facing is that they told us he needed to repair and to transfer liam to them. Now that hes here theyre saying they dont even know if he needs it. Were frustrated to say the least. And there for a minute it sounded like they thought theyd have him released by monday. I said thats not happening otherwise we wasted over $500 we couldnt waste to get him here. Thats not even the cost to get DH home nor the cost of me staying and im sleeping at bedside. So yes frustration is just a part of how we feel. Liam had a floral today that showed his diaphragm was working but now we need to find out if its working enough. Sent from Yahoo! Mail on Android

Humbleing

I talked to our pediatrician today. He's working with Dr Miniati (surgeon and CDH specialist from UCSF) and theyre going to come up with a plan to help Liam. All weekend they kept missing eachother due to crappy cell reception but hopefully tomarrow at Liams appointment Ill have some news. What their plan is and then Ill have to figure out to comply with their plan if its taking Liam to UCSF, which im pretty sure is. Our Ped says he needs to atleast go for a CDH clinic but with all his respitory issues he thinks it'll be more than that. Question is when. Money shouldnt be my worry, it should be my son. We always figure a way to make things work or God finds a way to provide. I pray that we get Liam fixed and that one day I will be able to pay forward all the generosity you all have shown us. Before my son came along I didn't think this world had so many kind and generous people in it. I didn't think there was this much good, this much love left in people. I am an optimist but the amount of feedback we have seen has been truely amazing. From your donations, your prayers, your comments or just following Liams progress its blown me away. Liam's facebook page alone has 103 fans and I couldn't believe at first that 103 people out there care and love my son in their own way. It's still baffeling. I want to thank you for caring, for praying, for loving, for humbleing me. I will do my best to keep this blog going and keep posting updates on Liam and our family. You are truely an amazing group of readers.