So close

Life has been so busy since I last posted. (If you make it to the end there are pictures!) Graham is FINALLY out of the ICU and hopefully going home next week!  (We have been in the hospital since January 13, the tracheostomy was February 5, and he got of the ICU on April 11.) When I last posted Graham had suffered an injury to his trachea from the custom long trach and he was sedated and on the oscillator. After 4 days he was put back on the regular ventilator and back to the shorter trach. Since then he has had many more ups and downs. 

Graham had difficulty tolerating feeds (vomiting) and so the doctors insisted on trying to feed him in his jejunum (intestines) and bypassing his stomach. This involved 3 trips to radiology to try and place the j tube and it kept pulling back into his stomach. Apparently Graham's anatomy is not conducive with j tubes. We were actually kind of glad that the j tube didn't work because we believe Graham can tolerate food in his stomach if it is the right food. 

I have heard from countless families in my online communities that their children did not tolerate commercial formulas and did much better on real blended food. I have been around and around with doctors in every department at Duke hospital and they do not allow parents to blend food and give it through the gtube while in the hospital. (nor will they blend food for tubies.) The arguments are that they cannot ensure the food is not spoiled and that they cannot track the calories as easily. So they trust parents to change trachs but not to feed their children safe food. Ugh. 

Well my next move was to push for a product called Liquid Hope. It is an FDA approved tube feeding whole foods formula. After asking and pushing for weeks it was finally approved. We have to order it ourselves but they are allowing it!! This a huge answer to prayer. Graham has been on Liquid Hope since last Friday and the vomiting has stopped, he feels better, he is playing with toys (didn't touch toys for weeks), and the reflux is better. It is truly amazing. It is unreal the number of tube fed children whose vomiting and reflux are treated with medicine and surgery instead of change in diet to real foods. Who would have thunk that his body would tolerate real food better than artificial nutrition?!? (duh) This is something that the medical community needs to get on board with and I may just have to help facilitate that... Once Graham is home I may transition to blending his food ourselves or we may stick with Liquid Hope for a while (especially if insurance covers it). Blending food ourselves is a big responsibility because we have to ensure he gets enough calories in the right volume and all other necessary nutrients.

When we were advocating for real food for Graham in the ICU the doctors suggested allowing Graham to start eating orally again because that was the only way they could get real food in him according to policy. Great! So the speech therapist came and offered Graham something to eat and drink for the first time since early January. Then she decided that Graham has too high of a risk for aspiration due to his ventilator settings to move forward with feeding therapy. They are unwilling to even do a swallow study to show whether or not Graham is aspirating. Well offering the food and drink awakened a monster and Graham begged and begged and threw tantrums for something to put in his mouth. Can you blame him? The docs finally allowed small amounts of water on a sponge. I could have strangled that therapist for offering Graham something when she had no intentions of moving forward with eating/drinking. Well the feeding therapist refuses to even work with Graham until he is on lower ventilator settings and tolerating a speaking valve but the pulmanologist refuses to do any respiratory weans because they just want to keep him stable and get him out of the hospital.Graham not eating orally has been very difficult for Matt and I because one of the reasons we decided to do the trach was because we were told he would be able to eat with the trach and he couldn't with the bipap mask. Not eating and drinking in front of Graham will be difficult once he is home and as the twins get older. We hope that Graham's respiratory status will improve quickly and that our speech therapist outside the hospital will have a different perspective.

About a week after the speech therapist incident Graham became violently out of control. We couldn't tell if he was delirious or in pain or both. He would thrash and bite and pull at the trach and kick and cry for hours. This was a miserable time for all of us and very frustrating because the doctors couldn't find / wouldn't look for answers. Slowly things improved with new medicines and getting out of the ICU.

A few days after moving to the "Step Down" unit Graham's hemoglobin dropped enough that he had to get a blood transfusion. When the hemoglobin drops one of three things could be happening: he isn't producing enough red blood cells, his body is destroying red blood cells, or he is bleeding. They ran blood work and did a CT scan of his brain. The scan showed some bleeding on his brain. Not enough to have to do anything about it and not enough to totally explain the drop in his hemoglobin. The bleed is most likely from the blood thinner shots that Graham got twice a day for 6 weeks to treat an old clot in his leg. Ugh. We had protested the blood thinner because we knew it was an old clot and felt treatment wasn't necessary. The clot is still there and now he has blood on the brain. This could have been the source of his misery when he was so violent but we don't know for sure.

The doctors are continuing to closely track Graham's hemoglobin. They haven't exactly decided if it was an acute issue from being sick and having lots of labs drawn or if Graham has another more serious blood issue. This is one of the things that has to resolve before he can go home.

Graham has continued to fight with the Pseudomonas infection. Since his first hospitalization in October he goes on antibiotics for 7-10 days and then two days later his secretions get thicker and he requires more suctioning and then he gets a fever and then they draw samples (blood, urine, sputum) and determine its the Pseudomonas and put him back on antibiotics. He will probably battle with this infection until he doesn't have the trach anymore and we just have to try and keep it at bay. They have finally changed treatment plan and put him on an inhaled antibiotic which he will possibly be on long term. On for 30 days and off for 30 days. We will pray that the Lord will just take away this infection!

Since Graham has battled with infection and fevers the doctors called in the Immunologist. She ran tests and has diagnosed Graham with partial DiGeorge syndrome. This syndrome is also known as 22q11 Deletion but Graham isn't actually missing this chromosome. He meets the other criteria for the syndrome: heart defect and low T cell count. People with this syndrome would normally not fight infection well and shouldn't get live vaccines. Well Graham has not been a sickly child and did fine with all his vaccinations. So we are a little underwhelmed by this diagnosis but its something to keep an eye on.

The last week has been very busy as Matt and I make preparations for Graham coming home. We have to do lots of training for Graham's care and equipment. We have been approved by CAP/C which qualifies us for Medicaid as a secondary insurance which covers nursing care at home. We are lining up nursing care and supplies and making doctor's appointments and rearranging our house to accommodate Graham and all his medical equipment and supplies.

We are so thankful for all the prayers and support. Please keep praying that things hold course and we get home next week and stay home for a while. To God be the Glory.

There has been more misery than smiles unfortunately. But here are a few captured smiles! And they are increasing in frequency every day now that things are looking up! These are in reverse order cuz it happened that way and I'm too time crunched to change it. 

Hospital Entertainment.

Insurance pays for the wipes.

Hey. If it gets a smile...

A boy and his cars.

Wearing green for our friend Eli who got a bone marrow transplant last week at Duke.

New favorite toy. Loves sticking his finger in his nose and in these balls.

Bath after a poop explosion. (suppository)

Bubbles for the win.

The trach doubles as a head rest. When he's too sedated to stay awake and too stubborn to lay down.

Getting a shampoo after an EEG left sticky goo in his hair.

1 step forward and 2 steps back

I know I got the cliche backwards but that's what it's been like for our little guy. Graham's custom trach arrived Friday a week ago and it was put in on Saturday. His breathing improved with the longer trach and we were all set to finally move out of the ICU on Wednesday. But Graham had another episode of high heart rate and low oxygenation. And then on Thursday everything hit the fan. Graham started declining and with a room full of doctors they could not properly ventilate Graham. His oxygenation, which is usually in the 90s, was dropping as low as the 30s.

They called ENT to come scope him and at first they thought there was still some collapse of his trachea below the trach and they removed the trach and put in a tube that they could put in deeper but it didn't help. Eventually the attending ent doctor got out of surgery and came up and decided that there was some injury to the back wall of the trachea and a piece of tissue had been dislodged and it was blocking the airway. So they put in his shorter trach to not irritate the injured area and allow it to heal. The injury could be from trach changes or just wear over time from where the trach sits. Ent will evaluate again once he is better to find a proper fitting trach. They had to fully sedate and paralyze Graham and put him on a different kind of ventilator called an oscillator. This machine gives 480 tiny breaths a minute and so Graham's little body is vibrating. 

They had much difficult getting in additional access lines after all the craziness. Graham has been stuck so many times that he has no good veins or arteries. It took attending doctors hours to finally get in a central line (for meds) and arterial line (for blood pressure monitoring and drawing blood for labs). Graham had a PICC line but this is a tiny line and meds can't be given quickly enough in emergency situations. We praise God that they finally got the access lines. Graham looks like a pin cushions from dozens of sticks. 

Graham also developed a fever again. It is most likely the same infection he has been fighting for months rearing it's ugly little head again. He is back on antibiotics today and the fever is down. They have been to come down on the oscillator settings and down on the oxygen some over the weekend which is good. They worry about damaging the lungs when he stays on such high support. His left lung is expanding more than his right and we aren't quite sure why. 

It has been a long few days. We are very discouraged. We long for Graham to get out of the ICU and to get home. We have had many people praying for us and encouraging us. We continue to wait on The Lord to heal Graham. 

Our nurse snagged us a Mr. Potato Head quilt and a dog stuffie (you know from the infomercials)! G loves Mr. Potato Head. (All donated to hospital.)

That machine to the right is the oscillator. Looks so 1970s doesn't it? The machine in the background on standby is the regular ventilator. 

This organization made all the kids capes today! Very sweet ( although not sure he will be able to wear it with the trach.)

So thankful for all the programs and organizations that seek to improve life for kids in the hospital. 

Update on Graham

Graham had surgery to place a tracheostomy, breathing tube in his neck, on February 5. The surgery itself went well but the recovery has been rocky. Graham is still in the ICU four weeks later. Graham has battled with a Pseudomonas infection since last November when he first went into the hospital. Now that he has plastic in his neck, infection will be a frequent if not constant battle. Graham continues to have coughing and vomiting fits. We are not sure why he is coughing. It could be the infection that comes and goes. It could be irritation from the trach. We are not sure why he is vomiting. It could be all the coughing or it could be a GI issue.

We are thankful that Graham is tolerating the trach and not grabbing at it or pulling it out. That is surely the grace of God! It has to be cleaned and the ties around his neck replaced twice a day. He tolerates this sometimes and sometimes looses his mind. Matt and I are learning how to care for the trach and how to change it. We have to change it out a certain number of times before going home. Unfortunately the trach keeps coming out accidentally (when G coughs a lot or rolls suddenly) and has to be replaced emergently by the respiratory therapist so we haven't had a chance to do it much ourselves yet. It can only be changed every few days because we don't want to irritate the stoma (hole in neck) or the trachea too much.

The right side of Graham's heart is getting larger because it is working too hard. We know that Graham's heart is still not in great shape but we had been told that his heart condition is not contributing to his respiratory difficulties and that he shouldn't need any further heart surgery until he is a young adult. Well... due to Graham's slow recovery, increased need for high respiratory support, and the enlarging of the right side of the heart, the cardiologists have been wanting to do a heart catheterization to get a good look at his heart. We had been putting them off because it didn't seem urgent and we wanted to let Graham get stronger first. Last week Graham had a random episode of serious respiratory and cardiac distress that called in all the doctors in the middle of the night. So on Monday they went forward with the catheterization.

He was in the procedure room for about 7 hours. The pulmonary arteries going from the heart to the lungs are narrow and they decided to place a stint in the left pulmonary artery. The stint didn't stay in place and they spent hours trying to move it back into place. They ended up stabilizing the stint in another location so it wouldn't have to be removed with open heart surgery but it isn't doing him any good where it is. Nothing is ever straight forward with this kid. Sigh.

Today ENT scoped Graham (put a camera down his trach) to measure his trachea. We have been waiting on them for a WEEK. They think that he could benefit from a longer trach to stint open more of his trachea to allow air to pass. This requires a custom order trach that will take anywhere from a few days to a month to get. We pray it comes quickly and that it will work well for Graham.

We continue to pray for God to heal Graham at least enough so that we can go home. We continue to be blessed by family, friends, and even strangers as we walk this valley. Thank you for your prayers and support!

A few days after surgery.

A couple weeks after surgery. He's into stickers lately. Note stickers on his suction catheter. Oops.

Snuggles with mommy, 4 weeks since surgery, 2 days since heart cath.

His nurse went and got him some snow! (She might be our favorite.)

Rest!

Missions & Ministry?

Matt and I made it church with the twins last week. The first time for the twins and only the 2nd time for me since August. It happened to be missions festival Sunday. Matt and I obviously aren't going to pack up our family and move overseas for missions any time soon. We aren't even going to leave the triangle until Graham is grown or miraculously healed. We don't have time to lead Bible study or be involved in any church programs. So what is our place in missions right now and for the foreseeable future? How can our family with so little time and energy make much of Christ? We don't know exactly but we are asking God that and praying for him to show us and for us to be willing participants and not just be totally absorbed in our own lives. Although it is very difficult to think of anything besides the needs of our family right now we know others around us need Jesus. Will you pray with us that the Lord would use us and that we would take opportunities that he gives us?

Here is one cool story that happened recently as I've been trying to keep my head up enough to see opportunities to meet and encourage people in the hospital. I was eating lunch in the cafeteria and I was ignoring Gods prompting to talk to an older lady at my table. Then I spilled my soup all over myself and on my way to get napkins I told God that I was definitely not in the mood for chatting now. When I returned to the table the lady started talking to me. When she heard my story she opened her purse and gave me $20, saying that instead of putting flowers on her husbands grave she gives that money to people who need it. God said I'll see your stubbornness and raise you a blessing. Boom.

Twins Birth Story

Let's see if I can remember that far back... I was hospitalized for pre-term labor at 31 weeks and came home on bed rest. I had consistent contractions on and off for 6 weeks but my cervix held those babies in! At about 35 weeks I started itching like crazy all over. It was miserable. I was already pretty miserable with pelvic pain, not able to stand or even sit up straight for more than a few minutes at a time. And now with the itching, I was sleeping only a couple of hours a night. So I went to see the OB and they confirmed I had cholestasis and they scheduled me for an induction on Tuesday, October 21. Everyone was pleased and surprised that I made it to 37 weeks!

Early Tuesday morning (the day I was scheduled for an induction) my water broke. My water broke with Graham while on the toilet and I felt a gush. But this time, I literally felt a pop in my belly and knew it was a much different feeling than anything I had felt before. I was laying on the couch, not sleeping, and decided to sit up and see if I felt anything. Somebody had folded towels the day before and left them piled on the coffee table. This was divine because as soon as I started to sit up I had to grab a towel to catch the gushing! I called the OB and then went to wake Matt. When I told him my water broke he said, "of course it did." I was so relieved that labor had started on its on instead of having to be induced.

We stopped by Bojangles at 5;30am and got some breakfast, knowing that once I was at the hospital they wouldn't let me eat. When we got to the hospital the triage nurse was having a difficult time finding the babies' heart beats with the monitors based on where I told her they had been previously. The doctor brought in the ultrasound machine to find the babies and Hallie had flipped upside down in the last week. Ben was first to come out and he was still head down so we planned to proceed with a vaginal delivery. My labor was progressing quickly and the nurse was moving too slowly. I was like look, the babies are fine. Stop chasing them with the monitors and get my IV in to start my antibiotic (for strep B) and get me moved to a labor room for my epidural. I did not have an epidural with Graham but I had been convinced it was a good idea to get one with the twins in case something went wrong during delivery and I needed a c-section. If I was going to get one then I wanted to go ahead and get it!

By the time they came with that epidural I was 7 cm dilated and hurting bad. They immediately took me to the OR for delivery after the epidural was placed. They like for multiple births to take place in the OR just in case something goes wrong and a c-section is needed.

They had me get on the narrow, hard, flat operating table. I was so thankful I opted for the epidural because I don't think I could have laid flat on that little table and birthed 2 babies. I birthed Graham with no epidural but I got to be in the nice birthing bed and get in whatever position I wanted. The OR was freezing and I was shaking uncontrollably from the cold and the stress. By the time they wanted me to push, I couldn't feel anything. They said I was doing a great job pushing so I just kept doing what I was doing. Ben came out with no problems and then the OB brought the ultrasound over and turned Hallie. She had one hand pushing on my belly and the other hand inside me! Again, thankful for the epidural. She got her turned and we waited a few contractions to move her down and 3 pushes and she was out, 15 minutes after her brother. A few minutes later Matt was holding a baby and I was holding a baby. Two healthy babies! Delivered vaginally! Thank you, Lord.

Ben was born at 9:11am and was 6lbs 9oz and 20.5 inches. Hallie was born at 9:26am 6lbs 3 oz and 19 inches. And what a blessing they have been! If Matt and I had known what would be going on with Graham these last few months we would have certainly waited much longer to consider having more children. But the Lord in his infinite wisdom blessed us with two sweet babies to snuggle and bring joy during an otherwise very difficult time.

And now some newborn photos! The sweet photographer has offered to come take pictures of all three kiddos once Graham is home from the hospital at no additional charge!

BOGO Surgery

Too bad Duke didn't have a Buy One Get One Free sale on surgery this week! Graham had surgery for his tracheostomy on Thursday and I (Liz) had my gall bladder removed on Friday.

It started with a stomach ache Tuesday afternoon, then an intense upper abdomen pain, then an intense middle back pain. I was with Graham at the hospital and by the time Matt got there after work I was barely able to stand. He wheeled me down to the ER in a wheel chair and then went back to be with Graham. The pain lasted a few hours and then let up. The doctors say I must have passed a gall stone and did they did an ultrasound of my abdomen and said my gall bladder was full of stones. My blood work showed that I had pancreatitis. Passing the stone made my pancreas very angry. They wanted to admit me until my pancreas calmed down and then remove the gall bladder. Well Thursday morning my pancreas was completely recovered and the surgeon said it was the quickest recovery from pancreatitis that he has ever seen. I told him my family had a lot of people praying for us. They wanted to do surgery on Thursday but I convinced them to wait until Friday since my son was having surgery that day. I spent all of Thursday with Graham and family, wandering the hospital with an IV in my arm.

Graham's surgery went well. He is still pretty sedated because they want him to be still and calm until the site heals. He may have gotten an infection of some sort because he is snotty and having some breathing difficulty and has a fever. We are hoping that this trach will be a good thing for Graham but right now its hard because he went from a smiling boy playing with toys to sedated and swollen with bloody bandages on his neck. 

My surgery went well too. But I underestimated the pain and recovery. Just because a surgery is "routine" and "outpatient" doesn't mean its not a beast. I am hoping the pain will subside soon so I can get back to caring for Graham and the babies but right now I am taking plenty of oxycodone and snuggling with the heating pad. I was discharged late Friday night and got to see my babies Saturday morning for the first time since Tuesday morning.

Both sets of grandparents are in town for the weekend. Thank goodness. We continue to pray for God's nearness and strength and healing.

Update on life

So I keep thinking that I will have time to go back and write about all that has happened in the last few months but things continue to be crazy for us and so I have decided to give a brief update and then continue on with current news. 

Graham stayed in the hospital until December 29. We had thought we would be home by Christmas but we didn't make it. Some dear sweet friends decorated our house for Christmas and we celebrated when we came home. This was such a wonderful gift, to come home to a decorated house, tree and everything. I am so blessed to have friends sweet enough to go in my attic and buy us a real tree!

Graham got a G-tube (feeding tube in his stomach) while in the hospital so that we can get enough nutrition in him for him to start growing. He burns so many calories with his work of breathing that he hasn't been growing well. He came home using a BiPap machine at night (breathing support with nasal mask), a pulse ox machine (sticker on his toe to monitor oxygen saturation) and a feeding pump. He did great at home for about 5 days and then started to have more labored breathing. He was on BiPap most of the day and we decided he needed to see the pulmanologist again. On our way to Duke we had to pull over on 540 and call EMS because Graham wasn't breathing well and was turning blue. SCARY. We got a ride to Duke and have been here since (about 2.5 weeks).

Graham has had a scope by ENT to see his airway and he has severe tracheobronchomalacia, floppy airways. We are faced with deciding whether to try and make BiPap work again or getting a tracheostomy and ventilator. This is a very difficult decision. The trach is invasive but offers some benefits. Accepting that Graham needs such serious support is difficult. Please pray for us to have wisdom and courage to make the right decision.

Graham is on BiPap 24/7 right now and not making much progress. He cannot eat or drink orally while on BiPap and he begs for something to put in his mouth. He also cannot go on any wagon rides while hooked to the BiPap. I am spending my days and every other night at the hospital with him. My mom and Matt are filling in evenings and other nights. We have hired a part time nanny for the twins. I am really missing spending time with my babies!

We praise God that Graham is still here and he has come so far from this picture. 

We pray for the Lord to continue to uphold us and carry us through whatever still lies ahead.